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Hi Everyone. I don't usually join forums or conversations but for once I feel like I need to vent!I was diagnosed in 1995 and was in my mid twenties. When my doctor gave me my diagnosis it was a "soft", unsure "you probably have Lupus" thing. So years went by before I finally started telling my Primary Care Physician about extreme symptoms I was having forgetting about the fact that they may be related to Lupus. Finally I was sent to a Rheumatologist who worked with me and got me on Plaquanil and recommended antioxidants. It all worked for a while. I thought I was a very lucky girl able to workout 6-8 time per week (I am a fitness Instructor) and not really suffer any symptoms. Then- three years ago I started hurting in my knees, then other joints. I started feeling tired and getting forgetful. Then my HAIR started falling out all over my head. I started wearing wigs and went to the doctor who said it would come back. It did, but not as long as it had been and a lot thinner than normal! So I still had to wear wigs. Teaching was getting hard because I couldn't find cool enough ones to work out in or that looked sporty enough, or real enough. Needless to say I got very depressed. Went on medication for depression and felt like I was in mourning! No one told me that one day I could wake up and life as I knew it would be different. I cry when I get on web sites like Web MD in search of help as to why I'm feeling like I am. My doctors seem to not know what the heck to tell me. It's always a guessing game with them. THEN, because of insurance changes I could no longer see my Rheumatologist so I am stuck with my GP! This year was the first year in three that my hair grew back pretty and full. Then one day in October I woke up and took a shower. While washing my hair tons of hair washed out and subsequent washes after that til now, Dec 8, 2012, I am practically bald!Now I am online looking for hair that will stay on my head because I don't even have enough for the wigs with clips and combs!I am absolutely beside myself and intensely sad. It doesn't help to know I am not the only one! I'm in a new relationship and I can't tell you how depressed I am knowing I have to explain that I'm bald to my boyfriend......Ugh!

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4 Replies |Watch This Discussion | Report This| Share this:Hair lossHi Everyone. I don't usually join forums or conversations but for once I feel like I need to vent!I was diagnosed in 1995 and was in my mid twenties. When my doctor gave me my diagnosis it was a "soft", unsure "you probably have Lupus" thing. So years went by before I finally started telling my Primary Care Physician about extreme symptoms I was having forgetting about the fact that they may be related to Lupus. Finally I was sent to a Rheumatologist who worked with me and got me on Plaquanil and recommended antioxidants. It all worked for a while. I thought I was a very lucky girl able to workout 6-8 time per week (I am a fitness Instructor) and not really suffer any symptoms. Then- three years ago I started hurting in my knees, then other joints. I started feeling tired and getting forgetful. Then my HAIR started falling out all over my head. I started wearing wigs and went to the doctor who said it would come back. It did, but not as long as it had been and a lot thinner than normal! So I still had to wear wigs. Teaching was getting hard because I couldn't find cool enough ones to work out in or that looked sporty enough, or real enough. Needless to say I got very depressed. Went on medication for depression and felt like I was in mourning! No one told me that one day I could wake up and life as I knew it would be different. I cry when I get on web sites like Web MD in search of help as to why I'm feeling like I am. My doctors seem to not know what the heck to tell me. It's always a guessing game with them. THEN, because of insurance changes I could no longer see my Rheumatologist so I am stuck with my GP! This year was the first year in three that my hair grew back pretty and full. Then one day in October I woke up and took a shower. While washing my hair tons of hair washed out and subsequent washes after that til now, Dec 8, 2012, I am practically bald!Now I am online looking for hair that will stay on my head because I don't even have enough for the wigs with clips and combs!I am absolutely beside myself and intensely sad. It doesn't help to know I am not the only one! I'm in a new relationship and I can't tell you how depressed I am knowing I have to explain that I'm bald to my boyfriend......Ugh!

One of the toughest things with lupus is losing your hair. When mine started to fall out, It was a big blow to me considering I had really thick, beautiful hair which my mom referred to as my "crowning glory" I decided to take control of the situation and shave my head, Luckily, it didn't look bad at all. It was also a very positive thing for me to do. I bought a few wigs but didn't like how hot they were, so I decided to buy a bandana in every color they made and I wore those to coordinate with my outfit. I also had a few silk scarves for nicer occasions.

One time I was at a gas station when this woman approached me and said that I could go to Gilda's Club to get a free wig. I told her I didn't have cancer, but she said that wasn't a problem. I declined, but it may be an option for you to check out. Also contact the Lupus Foundation of Colorado to see if they have any resources to get wigs or at least a discount on one.

Also Some costume shops sell wigs that look like the real deal without the insane price tag.

One of the toughest things with lupus is losing your hair. When mine started to fall out, It was a big blow to me considering I had really thick, beautiful hair which my mom referred to as my "crowning glory" I decided to take control of the situation and shave my head, Luckily, it didn't look bad at all. It was also a very positive thing for me to do. I bought a few wigs but didn't like how hot they were, so I decided to buy a bandana in every color they made and I wore those to coordinate with my outfit. I also had a few silk scarves for nicer occasions.

One time I was at a gas station when this woman approached me and said that I could go to Gilda's Club to get a free wig. I told her I didn't have cancer, but she said that wasn't a problem. I declined, but it may be an option for you to check out. Also contact the Lupus Foundation of Colorado to see if they have any resources to get wigs or at least a discount on one.

Also Some costume shops sell wigs that look like the real deal without the insane price tag.

Have you seen a dermatologist? They can treat hairloss with kenalog injections in the scalp )not as bad as it sounds, they use a very tiny needle) I got the injections and my hair came back much quicker than it would have withouth them.

Lupylisa

With love, with patience and with faith, we'll make our way.

Thanks for your Reply!

Report This| Share this:Hair lossHave you seen a dermatologist? They can treat hairloss with kenalog injections in the scalp )not as bad as it sounds, they use a very tiny needle) I got the injections and my hair came back much quicker than it would have withouth them.

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